It s crazy how fast things can change with Mitochondrial diseases just a few hours after taking him off the oxygen and even getting a few smiles ( which was awesome and a sight I will never forget especially if those were the last smiles we ever get), while Annett went home to get us fresh clothes and supplies, Jagger started to have very strong violent spasms. He had a few spasms before but just for a few minutes and usually controllable with a small dose of morphine.
That episode yesterday lasted about 1 hour and we could not stop it with morphine and Valium. Even our nurse was shock by the strength of the spams.
The rest of the evening and the night were pretty quiet and Jagger got some good sleep.
Around 7.30, he woke up screaming hysterically and had another episode of violent spams. Doctors were able to witness it but nobody can tell for sure if it is muscle related or just neurological as his brain is slowly getting worst. So they have meds for both and he had 2 doses of morphine and an increase dose of Valium. Unfortunately none of it worked and the spasms went on for a little over 2.5 hours. I must say that has to be one of the hardest thing to see as a parent because he was in so much pain and nothing we could do calmed him down. I still believe none of the meds worked and he only stopped after over 2 hours because he was exhausted and fall asleep.
Dr K stopped by and said all we can do is to try to control the pain so they will increase his dose of morphine again and hopefully we can put a stop to those spasms.
He reminded us we need to decide about intubation or not if it is needed.
We think we made a decision on that matter but we will also discuss with our parents since everyone will be here tonight.
We were also really hoping to be able to take him home and manage all with pain meds but we are starting to rethink that, those spams episodes are so violent and scary we decided we want to stay in ICU until we get those under control for sure.
Annett parents made it here safely and I went to pick up my parents and one of my brothers at the airport.
Right before we made it back to the hospital, Jagger started to have another one of his spasms episode, this one was a little less violent and shorter, and maybe the morphine help that time, but we really need to talk with his care team tomorrow to see if we can do anything to stop those from even happening.
it's about 11 pm now and he is sleeping peaceful, hopefully he will for the rest of the night, and will not have any more spasms.
Here is a pic i took yesterday when he was smiling at us for a few minutes:
I took this short video to show one of his doctors that was not around this morning when he started his episode.
Now I warn you this is very difficult to watch, and I was only able to get the tail end of one of the spasms, he had them from over 2.5 hours this morning. In between each one you can see how he is breathing thru his stomach, which he only does when he is in a lot of pain.:(